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Lurking No Longer & Educating Loved ones

Hello, I'm Morrison and I've been lurking for a week or so, and decided to join because I can tell after reading a bunch of your threads that everyone here really understands what it's like to live with lupus. I'm a woman in my early 40's, and I was diagnosed about 3 years ago with lupus and sjogren's. Right from the start I pursued treatment with alternative medicine and found a good Naturopath and a counselor to help me. I've had ups and downs with how I've felt during the last 3 years, both physically and emotionally. About 6 months ago I quit my job on medical advice because I was having flares and getting depressed because of the stress at work. I'll be looking for a new, less stressful job starting in january.
An important issue for me has been that my partner and family, no matter how much I educate them, don't seem to understand or care what lupus is, or how it effects me physically. My Dad will call and ask how I am, and I'll say I've been dizzy and seriously achy and haven't got out of bed for a few days, and he'll ask why. I'll say it's the lupus, and he'll say, oh, I forget you have that.
Some family members never said anything again about lupus again after I told them I had it. My grandmother, who I was close to and who recently passed away, was diagnosed with fibromyalgia and I think she is the only one who understood what this is like, because she hurt all the time. I know she had the same issues with the family as I do, and maybe my family is just emotionally desensitized to chronic pain or something. My partner and family are loving and caring and would do anything for me, and my partner has been a blessing by silently taking over some of my expenses the last few months and he doesn't expect me to start working again until I'm feeling like I want to, but it's so weird how they just seem to have amnesia about the lupus. I don't know if it's really important for my family and partner to understand all about lupus, and maybe I should just give up trying to get understanding and be happy they're there for me.
I guess it's not like a broken leg that they can see, and since I look mostly OK, and don't constantly moan, and push myself a lot through the fatigue when I get together with them, they figure I'm OK. If I'm too sick I just don't do social things.
Thanks for reading all this, and I'm glad to be part of your community now. I would be interested in hearing about your experiences in dealing with and educating your partners and families.

Welcome to WHL. Hopfully as you learn from the many informative threads you will also help some of us newly diagnosed on how to cope. I suppose it isn't that bad for my co-workers and family to understand how I feel because I limp alot, and walk slowly when in pain. So it is obvious that I am in pain and have Lupus. My husband asks me daily how I am feeling, but it is the same story every morning Hubby "How are you feeling" - Me "Sore" - Hubby "Why" - Me "Lupus" - Hubby "OK" ....... Now that conversation gets a bit boring every day. We have come to an understanding that if there are any new aches or pains I will let him know and not mention the everyday pain, unless it is a particularly a bad day. My kids (18 - 21 - 23) though they are concerned about my health, and will help out if I ask them (reluctantly at times) they really do not know the extent of everyday difficulties I suffer.

I do not generally discuss being unwell with my extended family because I don't want their sympathy and I don't want them to go around discussing poor Linda and getting all upset and all that rubbish. That is not really helpful, especially if they think that I am a burden to my family and that someone is missing out because I can't do certain things. My Mother in law especially will just cry all the time and what is the point of that. I am the one sick, not her. I suppose no one really understands unless they suffer the illness themselves. When I am having a hard time I just think of so many others on this forum who are having a harder time than me. So bascially if people ask me how I am, I just say fine. They can generally get the idea how I am feeling by just looking at me, I try to hide the pain and the fatigue but apparently everyone can see it on my face or how I walk or move.

Hi and welcome to WHL! I am so glad you came out of the shadows and decided to join! This topic is very close to my heart because I deal with the same thing. My mother died 6 years ago and the rest of my family and I are not really close. When I told the others that I was ill they said all the right things but, except for 1 grown niece, I have not seen or heard from the others unless I call. Even then no one asks how I am doing. Thankfully I have a wonderful daughter that helps me with almost everything so between her and my niece I know I am very lucky.

I have come to believe that it is just difficult for healthy people to understand our world. Healthy people understand illness in small doses and then their world goes on. I think they have a hard time grasping the concept of long term illness without dieing. It is OK though. I found my Lupus family here and they get that part of my world so I now have the best of both. I have my real world blood family and I have my family that understands my illness. You have both now too.

Welcome to the family! I think you will be happy here

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

You know, it's kind of a strange phenomenon when I see these comments. My parents try to understand but call literally four times a day as if to see if my condition has disappeared. My brothers have literally evaperated. Not a word, not a comment, card -- not even an unrelated comment on Facebook. We weren't close before but this is totally ridiculous! My support system is tiny and as we know, we can't afford that! In my case, it's easy to see that I'm sick. My face is swollen and has aged about 15 years. I'm hoping that as I reduce my Prednisone the swelling will go down but I think the aging is a forever thing. But that's not the point. Guys, many of our doctors are absolutely clueless about this disease, I guess we really shouldn't expect all that much more from family.

Hi, and welcome to WHL,
My disability is obvious to all, since I can't go anywhere without my cane. My hubby is very wonderful about helping me to get around, but I do try to not dwell on my aches and pains too much. He's a computer geek, so he's always sending me articles that he's found about research into AI issues. He also holds degrees in biology and chemistry, so he has a very good understanding of the science behind what I have.
We're not living close to any family, due to a military assignment. I'm involved with the Spouse's Club. I'm older than all of the other wives, so they all treat me like "Mom". They are all quick to help me to get around or to carry something for me.
I guess I'm pretty lucky.
Hugs,
Marla

My hubby understands it all much better since I found the Spoon Theory essay on the butyoudontlooksick website. He keeps it on his phone to show his mates. His family makes no effort to understand, which hurts him more than me. My mum and dad try, but for people that are day-to-day healthy it's just not in their frame of reference.

Welcome to WHL, we do understand! Good luck,

Han

Sow a thought and reap an act,
Sow an act and reap a habit,
Sow a habit and reap a character,
Sow a character and reap a destiny.

I don't talk about being sick with my friends or family all that often either. They know that there is something wrong - have seen signs with a truly bad flare - but don't really understand. One of my aunts also has an AI issue that is much more physically obvious but she too started off by looking healthy as can be so they understand that there is something going on that will most likely get worse over time but not really what it is to live with it daily or even that certain characteristics, like the aches and pains in my joints are just here to stay. Like Linda, I don't like people acting like it's poor me and so I just buck up and go on. The only ones that really ask me about it are my mom, my younger sister, one of my cousins and that aunt. Other than them asking you guys are the only ones I really tell anything to about how I am feeling.

As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.

Thanks Linda From Australia, it gave me something to think about, to not go around telling everyone who knows I gave lupus that I feel unwell. I think I get into feeling sorry for myself sometimes and want everyone to know how bad I'm hurting. I like the understanding you described with your hubby - that you'll tell him if anything gets worse, but not have a daily conversation anymore about your ongoing lupus pain.
Take care, MorrisonGal

tgal, thanks for the welcome and understanding
serand4, oh my gosh, I can't even imagine your parents calling over and over to see if your condition is gone yet; maybe I should be happy my family isn't doing that. Good luck with getting the swelling under control.
magistramarla, thank you for the welcome
Han, I read the spoon theroy the other day - I'll see if I can get my partner to read it, thanks for the info. Thanks for the welcome.
SandyR, you and Linda have really given me something to think about - to not talk about how sick I feel to my family so they go around saying "poor Morrison"